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Surviving with HIV ain’t what
it used to be.
The older we become and the longer we
live with it, the more complications there appear to be.
In the mid-to-late 1980s, who could have
even imagined surviving another 15 and 20 years with HIV.
Yet here we are in 2004, still advocating for new treatments
and new targets for stopping HIV. And oddly enough, we’re
now facing complicated health issues that come with aging
and disease progression. Cancers. Heart disease. Metabolic
syndromes. Depression. Transplants. In this issue of PA we
examine several topics that 20 years ago didn’t concern
nearly anyone living with HIV.
But the real messed up part about surviving
with HIV for decades, or any life-threatening disease for
that matter, is that it’s getting more difficult by the
day to find and maintain affordable health insurance and drugs,
quality healthcare and reliable support services.
U.S. Rep. Nancy Pelosi (D-CA) and U.S.
Rep. Jim Leach (R-IA) in the U.S. House of Representatives
introduced the Early Treatment for HIV Act (ETHA), a bill
that would expand Medicaid to protect people with asymptomatic
HIV, in late February. If passed, the law would give state
Medicaid programs the option of providing services to people
with HIV, rather than waiting for the individual’s condition
to progress to AIDS. U.S. Senator Hillary Rodham Clinton (D-NY)
and U.S. Senator Gordon Smith (R-OR) introduced a similar
bill in the U.S. Senate in 2003. ETHA has widespread bi-partisan
support.
Speaking to The Advocate, Paul
Feldman of the Washington-based National Association of People
with AIDS (NAPWA) said, “The cruel irony of the current
situation is that poor people living with HIV are denied treatment
and care under Medicaid until they develop serious AIDS-defining
conditions [that would have] often [been] preventable if Medicaid
coverage had been available to them sooner.”
The insurance industry isn’t making
the decision to return to work any easier for individuals
who might find themselves uninsured for a period of time.
Here at TPAN, our health insurance carrier informed us at
the beginning of the year that any uninsured individuals hired
by the organization with a pre-existing condition (say, oh
I don’t know, maybe HIV) would now have to wait 18 months
before having their pre-existing condition covered by insurance.
Previously, the wait was twelve months. Nevertheless, the
employee still has to make monthly insurance premium payments
towards a policy they can’t use to cover visits to the
doctor and medicines for a life-threatening illness. In addition,
the escalating premiums for health insurance are also making
it difficult for small community-based organizations like
TPAN to maintain adequate, affordable coverage for its employees.
And please don’t get me started on
the price of medicines in this country. When my health insurance
plan changed in December 2003, my out-of-pocket monthly expenses
for medications tripled!
In early March the federal government
announced its grant awards under the Ryan White CARE Act to
51 local municipalities. According to reports, 40 metropolitan
areas, including Los Angeles and San Francisco, saw their
funding cut by 3 to 14 percent. Only 11 cities saw an increase
in their grants, with New York City leading with a 17.5 %
increase.
The grant application process is competitive,
where cities compete against each other for the best application.
Federal funding is directly linked to the number of people
living with AIDS, a number that has slowed in the last decade,
while the number of people living with HIV continues to increase.
Again, who would have thought 20 years ago that more people
would be “surviving with HIV” and fewer “dying
from AIDS”?
The CARE Act targets low-income patients
who lack medical insurance or whose coverage is insufficient.
The grants are used for everything from a visit to the doctor
and obtaining medication to alternative health care and mental
health counseling. The total Ryan White CARE budget for the
year is $595 million, a $5 million decrease from last year!
This is not good news for local and state governments experiencing
record deficits and exploring cuts to public health services.
It is so obvious that Medicaid policy,
the medical insurance industry, and funding for the CARE Act
are outdated and in need of a major overhaul. With hundreds
of thousands of people living with HIV and other life-threatening
diseases here in the U.S. being left behind, uninsured and/or
forced to make critical choices between food, meds and housing,
it’s time that our political representatives step up
to the plate and do a better job of representing us.
Make your voice heard this year. Make
your vote count.
Choose to Vote in 2004
Charles E. Clifton
Executive Director / Editor
Send comments and reactions to ed@tpan.com
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